After his diagnosis, Allen "Salty" Ross didn’t speak a word for four hours.
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He thought the pain was just his bad back playing up again.
Face to face with the beast, with Motor Neurone Disease, there were no words.
Salty says he didn’t know much about MND before his diagnosis.
Just enough to know it was the last thing he wanted to hear from his doctor.
Five months on, he still struggles to find words that can explain the cruel condition.
“It really is a sad disease,” Salty says.
“It's very hard on your friends and family.
“They don’t really know what to say either because it’s terminal and there is no cure or treatment. It’s very hard on them to watch you go downhill.”
It really makes you think, in such bad times I’ve got some wonderful friends.
- Salty
At 65, Salty is staring down the unknown.
With MND there’s no certainty, no timeline, no set course.
Tragically deterioration is the only thing guaranteed.
After decades delivering parcels around Wodonga, he’s had to stop though he’s been able to hold on to his business doing bookwork at home while his son takes on deliveries.
But he doubts he’ll be able to continue for much longer.
Using a mouse is getting more difficult.
“It’s getting harder and harder,” Salty says.
“My right arm and hand don’t work that well, my right leg doesn’t work that well – I limp fairly badly.
“It’s gradually getting worse.
“I’m left-handed and can still use my left so I can do things some people can’t. But I’m noticing it’s starting to get weaker too.”
Peter “PK” Kent knows too well what Salty is going through. The faltering of his body, leading to a loss of control, of autonomy, the loss of long held “plans”.
“I’ve never ever said ‘woe is me’, I’ve never felt sorry for myself,” PK says.
“But it’s frustrating.
“Frustrating times ten.”
Sixteen months after his diagnosis, PK is relatively philosophical about his condition.
It’s life. Just the way things go.
But still, some days, it doesn’t feel real.
Or fair.
“I had all these plans of swimming, riding and walking – but now I can’t do any of that,” he says.
“Sometimes I think it’s just a dream I’ll wake up from, it feels surreal.”
Back in 2017 a month after PK was diagnosed, he quit his job at the concrete plant.
A forced retirement at 60. Unwanted but unavoidable.
“I just couldn’t do it with my legs – I can hardly walk,” he says.
The hardest thing about MND is that there’s no cure, no certainty and no treatment: “You’re fighting the unknown, the beast, dealing with the unknown – that’s the hardest part.
“Most illnesses you’re diagnosed and they say ‘there’s this treatment’ or ‘we can try this’ – with MND there’s nothing.”
But PK views himself as one of the lucky ones.
At 62, he’s alive and the spasticity in his legs has not yet spread.
“I’m lucky, I’ve had it for 16 months and I can still get around, albeit with a wheelie walker, that’s lucky,” he says.
“I knew a guy who was diagnosed in February and died in May. The fact I can go so long and only my legs are affected... you do hold out hope, but no one can tell you a timespan.”
IN OTHER NEWS:
Salty too considers himself lucky because he’s not alone.
He has people willing to walk or shuffle alongside him.
Friends willing to rally a whole city in a show of support for those with MND.
“All my friends been absolutely magnificent, they’ve all got behind me,” Salty says.
“It really makes you think, in such bad times I’ve got some wonderful friends.”
Those friends, and the North Albury Sports Club where both men are members, are determined to walk with their mates through the unknown.
I had all these plans of swimming, riding and walking – but now I can’t do any of that. Sometimes I think it’s just a dream I’ll wake up from, it feels surreal.
- Peter Kent
On Sunday, more than 2000 people are expected to descend on Bunton Park to walk, endure ice challenges and raise money for Fight MND for the Salty and PK’s Shuffle.
Thousands fundraising for a cure, so the next generation of mates won’t have to face the beast unarmed.
For event chairman Steve Martini, Salty’s diagnosis pushed him to do something, anything, to help find a cure.
And to show his mate and others with MND that they’re not alone.
“Here’s a bloke who’s worked so hard and is towards getting retirement age where he should be able to sit back and enjoy life but this crippling disease is going to cut that short.
“It just breaks your heart really.
“I’ve know Salty 26 years and we’re like peas in a pod.
“We’ve got a small group of mates and we do everything together, we play lawn bowls, go fishing or drinking together and I see him every day.”
Seeing his long-time mate diagnosed with MND spurred Steve into action.
He formed the dedicated Salty and PK’s Shuffle committee to organise a 10-kilometre walk, ice bucket challenges, a jumping castle and raffles.
Steve and the committee even rallied Border celebrities and sports stars so they would attend and ensure the inaugural event this Sunday from 9am is a roaring success.
2AY’s Kylie King will MC the daytime event while Australian film, The Merger, will screen from 8pm. All donations will go towards Fight MND.
While it is unlikely a cure will be developed in time for PK or Salty, the pair want to raise as much money as possible so that a cure is one day found and others won’t have to go through what they have.
The event is also about awareness, PK says, because people need to know MND is torturous.
They need to hear what it’s like to fight the unknown, when everyday it’s harder to make a fist. If they know, they’ll donate.
“More people need to be aware that it’s such a mongrel thing to have,” PK says.
Salty, PK and another man with MND regularly meet for coffee and hope the fundraiser will also allow people with MND to get to know each other so they can support each other. So they know they’re not alone.
Because in a community where thousands unite to shuffle alongside two of their own – no one is alone.
Salty and PK’s Shuffle kicks off about 9am on Sunday at Bunton Park and everyone is welcome to attend or donate to Fight MND.
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